Permanence

Is it alright if I'm completely honest about this journey as a mother to a child that has special needs?  Since you said, "yes", I'll continue, and even if you said "no".  In the very beginning when we learned our sweet unborn baby had Spina Bifida, it was hard.  August 31st is the anniversary date and most parents will tell you that it's the date of a turning point in their lives.  It's a date that defines the "before" life and then the "after" life.  I grieved, I struggled, but truthfully I didn't really struggle with the acceptance.  It was the way it was, and either we were going to embrace the situation, heal and move on or we would be miserable.  I clearly remember having a conversation with my Mother-in-love (yes she truly is!).  She mentioned that she was praying for healing, and my response was that she could continue to do that, but I really felt like God was telling me "No, I'm not going to heal Toby; I have chosen this path for you, and will walk with you through this."  I also didn't struggle with the "why?" Again, this is my experience and I'm not telling you this to say it's wrong to ask why, I just didn't.  I felt like I could accept the "whys".  My faith in Christ began at a young age, and I know that here on earth we will experience suffering and trials.  Bruce and I had just finished a Bible study in the book of Ephesians, literally weeks before the news, and we had learned about trials.  I know that we suffer for many reasons, but here are a few I've learned:

1. So our faith grows to maturity and genuineness:
I Peter 3:6-7 "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory, and honor when Jesus Christ is revealed." and
James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything."

2. So we learn to trust God and not ourselves and learn a greater dependence on God:
II Corinthians 12:9a - "But he said to me, "My grace is sufficeint for you, for my power is made perfect in weakness..."

3. We live in an earth that is cursed by sin, and bad things happen to all people:
Job 5:7 "Yet man is born to trouble as surely as sparks fly upward."

4. To learn gratefulness and thankfulness - there is always something we can be thankful for in any circumstance:
"In everything give thanks; for this is God's will for you in Christ Jesus."

5. We are able to comfort others with the comfort we are comforted with and are able to help others that are going through rough times.  There is something wonderful being able to relate to others that really truly "get it" - they understand what you are going through.
II Corinthians 1:3-4 "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."

6.  For God to be glorified:
John 9:1-3 "As He passed by, He saw a man blind from birth.  And his disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?  Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him."

7.  So others will be drawn to Christ through our testimony:
Psalm 40:1-3 "I waited patiently for the Lord; And He inclined to me and heard my cry.  He brought me up out of the pit of destruction, out of the miry clay, and he set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

BUT, right now I'm struggling with the "permanence" of our situation.  I have mentioned this before, but when you have a special needs child it's the trial that doesn't go away.  The alternatives are death or Christ returning to take us to heaven.  The first is unfathomable to me - or something I wouldn't wish for, and the second is imminent, but we can't predict if that will happen in our lifetime.  So, we have to continue on living. It's not as if I'm living every day in a cloud of gloom and despair, but grief has a way of sneaking up on you at a moment when you don't expect it.  It can cause a perfectly normal looking woman to burst into tears in the infant department at Babies 'R Us because her child never got to wear those sleepers with zippers because of his feeding tubes, or at the park watching all those kids running around - her child will NEVER walk.

Last week in church was a perfect example.  Our pastor is preaching a series called "Reel to Real" The "reel life" being what everyone sees: the FB, blog, movie version of our lives where we put our best foot forward. The "real life" is what is true, real, etc.  Every week there has been a short video sharing people's "real" stories of God's transforming grace.  This week it was a story of a wonderful family and how their daughter was diagnosed with multiple sclerosis.  After a few years, she has been mostly healed from it.  Then....I lost it.

Healing - something that I do pray for in Toby, but don't expect this side of heaven.  I know that he has been healed in many ways - he's talking, he eats some solid food, he doesn't need his ventilator all the time, BUT he won't be healed, and for the first time in my life I'm asking why.  I know the answers, "My grace is sufficient in your weakness. "We are going to face trials of many kinds so it produces patience in our lives." But, I am needing something more - I want a personal answer for me - why did God choose us, this situation with Toby - why did He allow it to be so hard, so permanent?

There have been many friends along the way - some who do not have special needs children, but you can sense in them an understanding and empathy not many others show.  I am so thankful for these friends.  They are listening to the voice of the Holy Spirit.  They take the time to hear beyond your words, to listen, hug you, pray for you, at the exact right moment sense your needs and somehow give you the right words to explain what you are going through. They take the time to show empathy.  A dear friend gave that to me this morning - She said it, "Carrie, it's the permanence of it, isn't it?  She hit the nail on the head.  I'm struggling with the permanence, why did God allow Toby to have "this" version of Spina Bifida?  Again, I'm not walking around in doom and gloom all the time, but the grief has a way of sneaking up on me and yelling "Boo!"  Then I burst into tears and have to leave church to sob because I can't contain my grief (and I did).

I know God is saying to me a couple of things: "Seek me and find me - pray for the answers you are seeking." Secondly, that I have to continue to take every step in faith - not comparing our situation to others, but trusting that God's plan is perfect - it's completely perfect for us, right now, in this moment, for our situation.  His grace will be sufficient; His love will be there - it's greater than anything I can realize or expect. Lastly, as our pastor said this past Sunday this is about God's glory - showing His glory through our stories. It's not about me, it's not about Toby - it's God's story - His ever sufficient grace and mercy picking me up daily to not just survive this journey, but to thrive and have true joy.  Psalm 40:1-3 (see above) has sort of become my theme for this special needs life - my goal, my desire.  The last part says, "He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the Lord." If one person comes to know the Lord - to have a personal relationship of complete dependence on Him through our situation - it's worth it.  If one person is encouraged in their faith and is more intimately connected with the Father - it's worth it.  My prayer is that many will see our faith and will trust in the Lord because He hasn't failed us yet!